UK newbie says hello

[Bonzo Dog]

Hello fellow zip chests.

A little about myself

I'm a 54 year old English bloke, who is a bit of a cardiac veteran.

Started visiting cardiologists aged 6 (me not the cardiologist ), after a murmur was picked up by the school nurse. Aortic stenosis diagnosed. Mechanical valve went in 15 years ago in 1992 when I was 38. Hiss was nicked during surgery, so a pacemaker as well.

A pacemaker replacement five years later went wrong, the replacement of the replacement also failed. Five months and five pacemakers later there was little surprise when the endocarditis kicked in. My surgeon, for whom I have the greatest respect, has a direct, tell it as it is bedside manner summed up thus;-
" I've looked at the scans, an interesting collection of little cabbages growing in there. Quite a mess. Dig deep Simon, there's a 20% mortality rate on this one"
Homograph root and valve saved the day That was 1997.

Now in 2007 the homograph is leaking. Another valve redo is under discussion. This would be valve number 3. Surgery may not be an option. The surgeons seek a clear picture of the valve. The pacemaker prevents an MRI scan. I'm waiting for a high definition CT scan.

Based on the echo, and low def CT, but awaiting high def CT, I asked my forthright surgeon for the survival odds if he proceeded. "No better than 50/50", was the honest reply.

So, contributions to make and questions to ask. Very glad Google threw you up

 

[Superbob]

Wow, Bonzo Dog, that is some cardiac history! I wanted to welcome you here -- glad you found us -- and wish you well. You have got to be one tough bloke to have survived all that, and so I am putting the odds at better than 50-50 that you will come through your next challenge.

Glad you are here with us. We have a lot to learn from you. Hope folks here can be of help to you, too.

 

[Mary]

Hi, Bonzo!
I'm happy to make your acquantance, but I wish it were under different circumstances!
I am sure your experiences will help many members on VR, so thank you for joining .

 

[Ross]

In all honesty, I think every surgery is 50/50. Doesn't really matter if it HAS TO BE DONE. I was given 5/95 once and somehow, I'm still here.

Would you like to apply for tour guide status?

 

[Karlynn]

If you wished to over-excel at something, this was a really poor choice for something to over-excel in!!!! Over-excelling in making money would have been a better choice.

Seriously, I'm glad you found us. I got dizzy just reading your history. If you were in the US I'd advise you to go to Mayo or Cleveland where they deal daily with high-risk cases. Hopefully there is someplace in the UK you can seek out for their help.

One of our Grande Dames of this site is Nancy and her motto is "Never give in and never give up!"

By the looks of your avatar, I think you'll fit right in here.

 

[Magic8Ball]

Well hopefully you are just getting the typical Yorkshire view of your situation and things are not really that bad.

I'm an ex pat Geordie and cricket isn't my sport but the name 'fred truman' comes to mind as my typical yorkshire warts n all view of the world.

You have joined a good group, someone once mentioned that the mayo did 2nd opinions remotely if you send them your info...perhaps someone could confirm and you could contact them.

It's always good to have a surgeon/cardio you trust but to draw an analogy, sometimes you have a mechanic who's serviced your ford for years and all of a sudden you get a ferrari.....not always good to blindly stick with the same mechanic

 

[pamela]

Hi BD,

Sure glad you found this site, it's an amazing forum full of caring and sharing people. If your odds of survival are 50/50, take them, because without surgery, the odds of having an abbreviated future are 100%.

People often marvel at the strength of others and I am stunned at what you've come through. Given that, you know where to dig for it when it's needed.

Take Heart,

 

[WayneGM]

Quite the history, Bonzo Dog! Welcome to the VR community. Glad you found us. You've got a lot of experience to share, and I hope we can be of help to you, too.

 

[queenie]

Bonzo Dog, I wouldn't be happy with those odds either however, I know that going into a procedure requires the utmost confidence in the surgeon and the facility. All the decisions up until that point are yours-once you're under-the decisions are theirs. Make sure you know you have the best decisions makers available to you for the best outcome. You are not alone here. Best Wishes.

 

[Phyllis]

Just want to add my welcome and wish you the best. Please keep is informed after you have the high def CT.

 

[Curtsmum]

Wow you sure have been through a lot, just wanted to say welcome and to send my very best wishes your way, please keep us informed on your progress.Take care.

 

[francie12]

The Cleveland Clinic will do a long distance consult. You have to send them the actual studies (tapes, CDs, etc.) and they review them and give you an opinion.

 

[Andrew'sMom]

Hello! Can't offer much on the way of advice ... but I did want to say welcome! I hope things will work out well for you.

 

[warrenh123]

Can't offer you any advice as i'm new to all this myself. Just wanted to say hello and good luck from your neck of the woods.

All the best.

 

[Susan BAV]

Hi Simon - Well, google may have thrown us up but your post threw up a giggle .

You mentioned a high-def CT scan. Something I've read about on this site is a "64-slice CT scan," that is supposed to give really good pictures. Have you ever heard of that? Maybe it's the same thing as your high-def scan?

Why might you not be a candidate for another valve? From scarring? You dug deep last time despite all of those little cabbages... and your forthright surgeon wants you to dig deeper this time. Welcome to the site and please keep posting. I hope all goes well for you. Take care .

 

[Cooker]

Welcome to the zoo.....you look like you fit right in

 

[Bonzo Dog]

You mentioned a high-def CT scan. Something I've read about on this site is a "64-slice CT scan," that is supposed to give really good pictures. Have you ever heard of that? Maybe it's the same thing as your high-def scan?

They may well be the same thing. Not sure. The high definition aka high resolution CT, scans thinner slices at a quicker rate than standard CT. The image created is very precise and accurate.

Why might you not be a candidate for another valve? From scarring?

Scarring, yes, also calcification. Also lots of Dacron used. It too has hardened and wouldn't take sutures for a replacement valve to be anchored. A valve redo meant removing more tissue than is usual in normal first VR. Factor in tissue infected by Endocarditis and even more tissue was taken out.
If the valve, root and trimmings all came out this time, the question is, would anything be left to stitch onto? Hence the need for best possible internal imaging.

 

[njean]

Well Bonzo Dog, you've been through a tough course indeed but your attitude is so uplifting & I have no doubt that you will fare well if you have another surgery.

I echo what Ross said in his post, "every surgery is 50/50", the outcome is never a guaranteed but you must never throw in the towel! I too was given a 50/50 back in 75' but 33 years later, I'm still here & on the sidelines for a 4th very high risk re-do on my mechanical MV. I know I get freaked out everytime I think about it, which is all the time, but I also know that I have to get myself mentally prepared for it & so do you!

Welcome to the the VR community & I know that with some research you will find the perfect surgeon to do the job. They are out there, we just have to seek them out! Take care & best of luck to you!